My journey with SMA Type 1

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Logan’s 7 month b-day and interview

Logan’s birthday went so great! We had a great day and ended it with Pizza Hut and Stacey’s Sweets cupcakes!!! So delicious 😀

For gifts Logan received a Goofy to go with his Mickey Mouse, a sucker, and a sock monkey! He seemed to really like the sock monkey. Whenever I pulled it out of the bag for him, he immediately started breathing harder and his eye became really big.

Last night he didn’t sleep well 😦 We still don’t know what was wrong. He would wake up every hour and cry. It was rough…one of the roughest nights we have had in a while.

In the excitement for Logan’s birthday, I also forgot to mention two big things! On Sunday we had pictures taken by the lovely and talented Michelle (I posted a few at the bottom). We had so much fun. We even got pictures of Logan touching dirt and mud for the first time. At one point he tried to bring the bowl to his mouth lol! He also let me know when he was done, because he pushed the bowl out of my hand and it went splat! on the floor. Thank you to my wonderful husband for cleaning up that mess.

The other big news: we were chosen as a representing family at Children Miracle Network Hospitals dinner coming up on Saturday night! We are so excited for this opportunity because it has given us another outlet to spread SMA awareness. The reporter came over Wednesday morning to do the interview. He took a lot of footage so they could edit it and use some for the annual telethon! Again…so excited!!!

That excitement turned to disappointment and down right anger by this evening. Don’t get me wrong, we are still so excited that we are bring SMA awareness. However, the reported stated the dinner would be for us, or rather Logan. I immediately emailed Childrens Miracle Network because I thought their had to be a mistake. And there was. The news report was not approved and CMN was working on getting it fixed. We posted the link on our page, deleted it and then re-posted it with a comment clarifying the mistake.

Well, then I got a text message from a friend saying they saw the interview at 6pm. I was told it was only airing during the 5-7am hour! So we missed it!!!! Then found out it was the same story and it was being reported the dinner was for Logan. UGH!!!! So I called and asked the video to be pulled off the internet. It makes me so sad, because the video had some great footage of Logan including wiggling his little feet.

I talked to a producer and my hope is they will run a correction. This has been such a mess. But it has taught us a valuable lesson. We will require that we view the report before it is aired to make sure nothing is misrepresented.

We love the people at CMN. They have been a wonderful support during this time. I have mentioned before they help with some of our travel expenses and even covered a larger bill for Logan’s initial diagnosis testing done here in Springfield. They also provided the funds for Logan’s new mattress! We are so thankful for them! It sucks they can’t help with our STL bills…those are real zingers. But even the friendships we have made and opportunities to spread SMA, it has been worth our time 🙂

Tia, the pictures are amazing. Logan is such a beautiful baby! I am so sorry about your problems with the local news. That is so disappointing! I will be sending lots of prayers your way this week regarding Thursday!